Tuesday, April 27, 2010

I Can Only Imagine

Whenever I find myself chatting with a second grader I am always surprised by how bright they are and I enjoy every minute of our conversation. Then when we stop talking and I go along my way, my heart starts to sink a little bit. I can’t help but feel sorry for the greatest loss that we have and that is Lily’s voice. No matter how ok I am with her special needs, the wheelchair, the seizures (well sort of ok with), the pooping problems, and everything that goes along with her, it is the loss of her voice that I just can’t seem to ignore or get over. It is something that trips me up at the least expected moments and I don’t get angry. I just feel sad. Some reason today as been a rough day. I know I will snap out of it and writing will help me do so, but I’m just going to take some time to mourn the loss of what I was supposed to have. No matter how many kids we have and all the milestones they succeed easily, it will never replace what Lily can’t do.
There is a Christian song that even mainstream music listeners have probably have heard and it is called “I can only imagine” and in that song he talks about what he will do when he stands before Jesus. He says “Surrounded by Your glory, what will my heart feel Will I dance for you Jesus or in honour of you be still Will I stand in your presence or to my knees will I fall Will I sing hallelujah, will I be able to speak at all I can only imagine.” That song has a double meaning to us because we wonder that about Lily, will she dance and sing praises. Will she finally be able to do all the things on earth she never could? And it makes me think that one day, hopefully in a long time from now, Lily and I will be sitting on a park bench surrounded by pearly gates in a setting similar to central park in late spring, and we will be talking. We will be laughing. We will be singing. We will make up for all those years she just listened to me and I will listen to her. I will relish in the sound of her voice. And laugh at all the jokes she will tell me and tears will flow, and finally not from sadness, but from pure joy. I pray that day is very far away, but I do have to say I look forward to it.

Thursday, April 22, 2010

Rock of Love 2025

As I mentioned we had our back yard revamped (yes I know I have failed to upload pictures, hang me) and with that we had to have some deliveries made. Block was one delivery made to the house. The guy shows up, long hair, bandanna, tattoo sleeves... you get the picture. Well I let the kids watch him unload the block, because it was kind of cool how he got it all off the truck and on the drive way, and maybe the guy was fun to watch as well. Who said that? Anyway as the guy finishes and drives away he waves to us. Andi Jane said, "Mom! Did you see that? He waved to me!" "I know, he was really nice, wasn't he?" "Mom, I think I am going to marry him".
Oh brother.

Tuesday, April 20, 2010

Seizures, Venom, BBQ

Lily’s having a big seizure each day. The new med is making her so tired and I’m thinking it may not be worth it. I really hate trying to figure meds out. They make her tired and she is still having seizures. I would love to take her off everything, hospitalize her, and start from a clean slate. Lily is on four meds right now and I know she doesn’t need all four meds. It’s so frustrating! I just put her on the full dose today of the new med, Vimpat, and we will see if it helps, if not I may just take her off. She is spacey and sleepy on it and I’m just so tired of trying to figure it all out. I don’t know this stuff. I’m not an expert. I’m a mom thrown into this and I’m just trying to find my life boat. Can someone just toss me a life vest? Please?
Talking about being thrown into this, yesterday Andi Jane spewed evil hatred upon me, and left me wondering what the hell I do with this. She didn’t get her way and bam, she told me she hated me, won’t love me, that I am STUPID (a very bad word in our house, she might as well thrown an f-bomb on me). It was awful. She was out of control. I drove home while she yelled at me and didn’t say a word. We got home and I said, “Get your butt in your room right now. RIGHT NOW!” She went and there she stayed until dinner time. It was about an hour and a half. But I was like, what do I do with this? I’ve seen her freak out before, but this was ridiculous! She was very apologetic later, but still… I just didn’t know what I am supposed to do. I didn’t react, I didn’t yell, I didn’t spank. But then I felt like a doormat. Did I do the right thing? I have no idea. I didn’t take her with me to the store and that is a punishment in itself, since she goes everywhere with me, but I just think I needed to do more. Or maybe I did enough? I don’t know. Sigh.
Oliver is still my sweet boy. Thank God. No complaints about him, yet. Give him a few more months I’m sure.
There IS good news though, the guys finished up our back yard! Yay! It looks great! Well not really finished it, the big stuff is done, we still have to paint and put in the actual BBQ in but otherwise they are done. The kids loved having Papa Steve here for 10 days and I think him and Andrew really enjoyed working together, well except when they were close to killing each other. :) I am going to put some pictures up on flickr today. If we are facebook friends you will have seen it already, if you aren’t…. why not?

Monday, April 12, 2010

All my bags are packed...

I am so excited! I booked a trip to Colorado Springs for Memorial Weekend! All by myself! Why, you ask? Because that is where the Rett Syndrome Family Conference is!
Bringing my family is not an option, so Andrew is staying home with the kiddos. The coolest thing about it all is that I was planning on going even if there wasn’t any CDKL5 specific information; there are so many seminars on things we are dealing with right now, scoliosis, bowel/GI issues, etc. But then the same day I booked the trip I got an email that IRSF invited IFCR (us, CDKL5) to be a part, we will have our own meeting and all the speakers, specialists, scientists etc will know we will be there so hopefully there will be some specific information on CDKL5!
I am so excited! There are so many aspects to my excitement. All the information I will get about Lily! Getting to meet some of my fellow CDKL5 mamas that I have only spoken online to! And maybe I am a tiny bit excited to stay in a hotel room by myself for three nights! I can’t even imagine what that will be like, but really look forward to finding out.
Only about 6 weeks, but who’s counting?

Sunday, April 11, 2010

Sit down, grab a chair, it's gonna be awhile

My goodness I haven’t posted much lately. I need to, I should have. Should I tell you about my lack of time, or do you really care? Excuses, like butt holes, we all have them and they all stink.
We went to neuro last week and besides being called his platinum VIP patients, it was a pretty typical appointment. He also wanted us to know that it really isn’t that a cool thing to be his VIP, but we are nonetheless. Lily is throwing new seizures our way on top of the drops and myoclonics she is slipping in some tonic clonics again, thankfully they aren’t long, but we all hate those. Lily the one who suffers the most. We who are watching hurt too.
He decided that she should be monitored again, since I also mentioned the possibility of her having partial complex seizures (absence, staring). So this summer Lily and I will be staying at the PEMU at Barrow’s (St Joes). We did it 3 years ago (and 5 years ago and 7 years ago) and will do it again. We are planned on staying for 3 days but it could be more or less. Nothing like living under surveillance for 3 days/nights, not too cool when you are notorious for talking in your sleep.
Dr. also put her on Vimpat, a new AED. We are supposed to start this one and wean Banzel, but every time I wean the Banzel her tonic clonics get worse, so I quit the wean and am waiting until she is on the full dose of Vimpat before weaning Banzel. I really don’t want her on 4 AED’s, but this is temporary and I am not willing to put her in the hospital because of not wanting her on 4. And I may not keep her on the Vimpat, or maybe we’ll wean Vigabitrine, or Clobzam. Unfortunately there is no exact science with AED’s and every patient is different. Dr. also let me know that I am as much of a seizure expert as he, he just knows more about every patient, but I am the Lily expert and I am to be included in every decision we make. Again, this is the gal who barely passed chemistry in high school.
Lily’s new respite care worker has been with us for one week and it is going very well. She is very sweet. She is a mom of 7 kids and has lots of grandkids. She is so good with Andi Jane as well; it is a job requirement since AJ will be up in their grill. No way around that. She is doing great with Lily. She has been looking stuff up about Lily to know more and when she says, you sure you don’t need me to stay longer some nights and get her showered and ready for bed? I was like, if you don’t have to be home than any night you want to stay later that would be wonderful! I am not one to ask for help so it is hard to ask more of people so maybe she picked up on that, or she needed more hours, whatever the case this is going to be a wonderful help.
I feel bad at times that I decided to have more kids when Lily needs so much more from me than typical children do. I openly admit Lily doesn’t get bathed as often as I’d like her to be. Her teeth don’t get brushed every night. Things I wish I could do, but I am poor with organization so we don’t do the same bedtime routine every night and sometimes by 7pm I am too exhausted to do all that I need to do for her. I need help and admitting it is the first step. Apparently I need AA. But Lily isn’t getting any smaller and I am going to need more help and I might as well get used to asking for it. I’m working on it.
Papa Steve drove from SD to help Andrew with our backyard. They will be working all week on it, they just had to start after the Nascar race. They will be getting started today and I am having panic attacks because they are taking down the pool fence for a few days. The very thought hurts my heart so we will be working on making barriers so the pool is not easily accessible. Oliver is a fast boy and a boy who loves water so I will need some prayers and help this week with him. I’m praying this week goes very fast. Can’t wait to see it all done, I can wait however to hear all the expletives that will indefinitely come from the mouths of these men. This is a HUGE project and I will share pictures of before and after. Papa Steve also brought a huge trampoline that they had at their campground and wow, what did we do with out it? Man, what do you do with a child with too much energy? Put her on a trampoline! We are going to get a net for around it, but right now only Andi is allowed to jump on it, no friends can come over yet. Luckily Andi is my cautious girl and isn’t trying double back flips… yet.
I’m finishing up this post sharing a couple pictures of Ollie’s one year pictures (done at 14 months, of course). My friend Liz did these and she is awesome! Check her out! (click on her name to go to her blog)





Monday, April 5, 2010

Good Bye

Good bye Nurse Jennie. You came when Lily was 4 and still in pre school. Andi Jane wasn't yet 2. You saw our family grow from 4 to 5. You saw us at our best and at our worst. You mourned with us the loss of our beloved dog Hailey, you were a nurse to our whole family answering questions about "is this normal?" or "should we go to the doctor?" and all the while took exceptional care of Lily. I trusted every minute you were home with her and we all felt like family. I can't believe our time had to end and it is so obvious the kids miss you. Andi had a brave exterior when she walked you out, but she ended up in her room sobbing. It was heart breaking to see her so heart broken. And I know if Lily could express herself she would have done the same thing.

We miss you already and I have already had a dream that you were back to work, what a bummer when I woke up.

We did find someone to work your shift, but we don't know if she will ever fill your shoes.

Thank you for all you did for us Jennie! We love you and will miss you! Good luck!


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